AIBU to think my life is not going to be worth living any more?

[NotAnotherPinkCandle]

My life feels like its falling apart.
I'm 30 weeks pregnant.
I have a 6 year old DS who is Autistic and has ADHD and PDA tendencies.

This wasn't a planned pregnancy as I've always struggled with DS so never planned for another as I knew it would be difficult.

Found out I was pregnant and decided to go ahead as at the time my situation was fairly stable and manageable and my DS is so lonely I thought it would be the right thing to give him a sibling.

But now my situation has completely changed.

DS has frankly been completely failed by the educational system. For the last 2 years he has only been allowed to attend his mainstream school for 2 hours a day 4 days a week. Mainstream couldn't cope with him or meet his needs.

We tried to move him to other mainstream schools but all of them rejected him.

We decided to move to a specialist school and went through the required process but every available special school also rejected him saying they couldn't meet his needs.

Looking back now I can see how much we were mislead and lied to by his mainstream school but at the time they convinced us that there was no reason the specialist school should have rejected him and that we should take it to tribunal as this school would be a really good fit for him and he would be allowed to finally interact with other children like him and build friendships and start some academic education.

We took it to tribunal which was a 7 month wait. In those 7 months we heard nothing from the specialist school to clarify why they rejected (now believe that information was kept from us by the mainstream school) so continued to believe the mainstream school when they told us the tribunal was the right decision and that DS would be so much better off in this specialist school.

The day of the tribunal came and we found out that the specialist school had rejected because the cohort are mostly non verbal and have profound cognitive disabilities and my son would not fit in there at all. Apart from a couple of students in the cohort who were operating on a similar level to DS. The tribunal discussed being able to move him up a year to be with children with similar needs to him and it was agreed this could be a possibility.

The final decision by the tribunal was that DS should attend this specialist school.

We then heard nothing from them for another 3 months. On the last 2 weeks before the summer holidays DS was invited for his transition to the new school and it was a disaster. We found out he had been held back a year without us being informed and that the entire class are non verbal and have significant needs. DS was very dysregulated and upset, not understanding why no one could talk to him or want to have social interaction with him and was asking when he could return to his mainstream school.

Then it was the summer holidays so next to impossible to contact anyone about this. The LA are completely useless and didn't want to know.

So on the first day of term we didn't send DS as he didn't want to go and we felt it was not in his best interests to send him into that environment. Specialist school agreed that its not the right setting for him and would be detrimental to him to attend and that they tried to say no but the tribunal forced them.

LA say now that it's been court ordered by a tribunal we cannot return to mainstream as they can't meet sons needs either and the LA has to approve his return to mainstream and they won't.

We can't transfer to another more suitable specialist school as there aren't any!

DS can't attend the specialist school as its completely inappropriate for him.

So he is left with nowhere to go.

The best we can hope for is alternative provision 2 mornings a week (as this is all the funding can provide) while we wait the whole of the academic year so that when DS is 7 other specialist schools will become available. Then we have to apply to those and hope they don't reject us so that the whole saga repeats itself!

During all of this happening DS's behaviour has deteriorated rapidly. I think all the disruption and change has been really difficult on him and also the anxiety he must have about a sibling coming soon.

He is now displaying behaviours I have never seem before making life next to impossible.

He is out of control, violent, defiant and destructive. Each day he pushes me to breaking point.

We are trapped in the house as he can no longer cope being around people as his behaviours instantly escalate and go out of control and he becomes a danger to himself and others.

I only have one family member who used to offer a lot of support with DS but due to these behavioural changes can no longer help us.

I have a DP but he is always at work and has 2 other children to support.

I am absolutely terrified of when the baby gets here as I don't see how I will cope with DS being with me all the time with behaviours like this. I don't even have the time to care for myself while with DS let alone a baby.

I'm also terrified this baby will end up being the same as DS and I will have two neurodiverse children to cope with.

I honestly feel so sick with stress and worry that I can't even see how my life will be worth living any more. DS already doesn't sleep, and needs constant supervision. There is no respite from him any more as no school and no family member to help any more.

I don't know what to do. Feel completely desperate and alone.

It might be worth seeking advice and support from a charity that is likely to have seen similar situations and can help navigate things. The NHS recommend:

National Autistic Society
For autistic adults and children, and their families.
Website: www.autism.org.uk

Ambitious about Autism
For autistic children and young people, their parents and carers.
Call: 020 8815 5444
E-mail: [email protected]
Website: www.ambitiousaboutautism.org.uk

That sounds so tough.

The ehcp system is shocking. The number of lies is terrible.

You and the school named need to call an emergency review if his ehcp. They need to say they can't meet needs and get them onside naming an alternative provider.

Do not sit back.

Email send department everyday asking them "what date is ds starting a place,ent suitable for his needs as you are required to provide by law?"

Once 15 days have passed email stating they have a legal duty to provide alternative education as ds cannot attend the one they provided.

Tell them if they do not provide an education you will take it further.

Also contact your MP.

Start visiting schools ,all special schools around an hour/ hour and an half away from you .
he will get a taxi ,you won’t have to drive.
you have to push and fight for the right special school
the lea don’t work out the correct school for each child ,they send child’s paper work to all school s and plump with whichever says yes ,within budget ofcourse .
why would you go to tribunal for a school not suitable for your son ..
you had 7 months to visit and speak with the school to make sure it was the right place ..that is the parents job to do ..not lea ..they are there to get the cost down as much as possible

I can’t help much with the school advice, but I will say that my ASD child was at his most unmanageable at age 7-8. He’s a teenager now and he’s like a different child. We did a LOT of work on managing his emotions and it paid off. We had traffic light systems and a safe place for him to go hide in when overwhelmed

It's not as simple as you make out. DS is entitled to a taxi now but this wasn't even organised. I had to chase it and they said they are too short staffed to sort it out and that it would be another 5 or 6 weeks into term before they could fit him on the school run.

I DID go to the school and visit before we requested it as a preference for the EHCP to be sent to.
When we visited the school it seemed fine. The staff showing us around assured us they had lots of children similar to DS, that they had dealt with it all before and that it would be better than mainstream. So we named the school as a preference. All the other schools the EHCP was sent to rejected and then so did the school we had visited.

Hence the confusion and not understanding why they had rejected. We tried to contact and find out over the 7 months before the tribunal but had NO contact from the school other than the standard "can't meet needs" answer. The mainstream school convinced us and assured us that this sort of thing happens all the time and they may just be saying they can't meet needs due to staffing or funding, things that can be rectified.

Obviously now we realise we were being lied to so that mainstream could wash their hands of us.

It wasn't until THE DAY of the tribunal when we were actually sat there with the judge that all of this came out. Even then, the judge and the tribunals team smoothed over it and made it sound like it could be a workable situation by DS being able move up to KS2 to be with children similar to him.

So it's not exactly like we chose to send him to a school that's not suitable. We were mislead by all the professionals involved who clearly didn't want the hassle of dealing with a SEN child.

@HashBrownandBeans Thanks for sharing your experience. Hearing things like this give me a bit of hope so thank you.

I didn't actually know this so thank you for sharing this information. If you don't mind I will send you a PM regarding this.

The issue we have with joining groups for my DS is that he becomes very very dysregulated as soon as he is around other people. He really only functions in a manageable way with one to one. This is why we are on our own most of the time. Before this massive school upheaval he was better at being around 2 or 3 people but as it stands now he is completely out of control around even one other person.

It's not that he doesn't want the social interaction. In fact it's the opposite. He desperately wants it and wants friends and people to go out with and play with but it's like the desire for this makes him so heightened and anxious about it that he just bubbles over and explodes with extreme behaviours.

We tried a pet but unfortunately DS tends to harass the animal and is too rough and too full on so it wouldn't be fair on a animal to live with us.

I haven't read full thread as I dont have time, but I am disgusted by how you have been treated. Im going through similar as my son is stuck in a mainstream but needs specialist. I've waited months for an EHCP and only going to panel next week.

Your MS was illegally excluding your child and the LA are not meeting their legal duties by proving a school place that is suitable for his needs. Your EHCP is a legal document. You need to write to them and explain that the EHCP is not meeting his needs and threaten legal action (the only way to get anything done sadly). IPSEA and contact are good organisations that can help. There are some good Youtubers too.

This is a national scandal that sadly most people don't give a shit about as it doesn't affect them. Therefore politicians don't care either.

Just to say I have so much sympathy and it must be so hard to deal with it all. Those 3rd trimester feelings around having a new baby and not being able to manage with your firstborn are totally normal at the best of times. That thought that you’ve upended your world through your own actions and it’s too late to change your mind…

I appreciate your situation is very different and those feelings are justifiably magnified for you, but thought it might help to know you’re not alone and loads of people feel this way towards the end of pregnancy with #2, regardless of situation. You can’t know what it’ll be like until it happens, and while you are right to plan ahead for the worst, I hope that your new baby brings your family lots of joy too and it all gets more manageable once you are no longer heavily pregnant.

Speaking of which, would DP be able to take a few days / half days annual leave (not paternity) towards the end of your pregnancy so you can look forward to a break every week, E.g. he could cover you for every Wednesday pm for the next 6 weeks? Some partners respond better to concrete solutions than problems and you need and deserve some time to slow down and rest BEFORE baby comes, let alone after.

Sorry haven't read whole thread so forgive me if I'm repeating. I'd see this baby as a chance to get back on track. Look up de schooling. He's clearly traumatized by what he's experienced. Take a year off with maternity (if you can) and focus on his well being. Trust me, he won't be 'behind'.
Think of it as a sabbatical for you all. I know it seems counterintuitive with a newborn but see it as a chance to re set family life with two kids.
Wishing you the very best.

Yes I think the relative would be able to help with the new baby for an hour here and there which would definitely be a help but doesn't do much to stop my absolute panic about how I'm going to cope.

DP has no family that live near us, they live 300 miles away and don't have much involvement due to the distance.

Your husband needs to step up. You are 7 months pregnant. He needs to limit the late evenings in the office and if he can't do that then he needs to give you proper time off at the weekends. He needs to arrange parental leave when your baby is born and be in sole charge of your son during that period while you are recovering from the c section. The thing that stands out most from your post isn't the actual situation you're in (although that does sound terrible) but how lonely you feel having to deal with it all alone. What is your relationship with your husband like?

I’m appalled, but sadly not surprised, at how appallingly you and your son, have been treated.

It’s not my area, but can you get in touch with a national charity and learn from them what supports you should pursue and what action you can take.

My friend got the highest level DLA for her son who is able to stay in mai stream, so you should too. It’s a good sum of money and will help with play therapy/ one to one lessons etc. once you are recognized as a cater, you will get in free to places you can take him and not have to queue etc.

Your local council may have a family support worker who can help. Mine provided advice but support and a listening ear for me. Charities may offer this too. Our council has a one stop shop ( phone line) to direct you to support.

Banardoes offered free counselling to me by phone and offered a range of support for my son, including free play therapy.

Maybe see if soial services have some respite, some foster caters supply this in some areas.

its shit you have to fight for all this when you are at your limit. But I found that once I got into the system for support, there was some there.

I’m so sorry the system is doing this to you. I really hope you get support and things improve and all goes well with your baby.

Our relationship is very strained right now. Being in this constant stressful situation managing such extreme behaviours has taken its toll on us over the years.
I think he has the same fears as me now regarding the new baby and of course trying to think about his two children from a previous relationship as well.
I think he wants out of the situation completely but feels he can't leave so is just distancing himself from it as he can no longer cope with it.

@NotAnotherPinkCandle I have a 9 year old with asd (pda) and severe mixed type adhd- it’s really really difficult.

My son was totally failed by mainstream school/the ehcp system etc and in the end we decided to home educate him.

I know it seems counterintuitive to have him around more when his behaviour is so difficult (I am physically disabled and chronically ill so I was worried I wouldn’t be able to cope) BUT once he was removed from that system and was allowed to feel safe in a low demand environment at home his behaviour improved so so much. He isn’t nearly as angry/destructive/disregulated etc as he was and is making really good academic progress.

Also- meditation for the adhd. Brilliantly helpful too.

I do wonder if this would be the case. Perhaps if he was at home consistently he might settle and calm down as right now he doesn't know where he stands and is constantly asking when he is going back to school and has massive anxiety around the plan for each day.

But still I'm terrified to unrole him and home educate as what if I couldn't cope. I reckon it would be next to impossible to get him back into the school system.

At base PDA is an anxiety driven need for control, so it’s really really common for them to improve so much when they are removed from school. Even special schools have very little knowledge or experience of pda.

I was really worried about home Ed, and probably kept my son in school a year too long but it has been ok. Don’t get me wrong, there are still challenges and it isn’t perfect but it’s so much better. Even though I got some respite when I got him into school the rest of the time was such a battle I look back now and think I don’t know how I coped then!

If you are on Facebook there are some pda specific support groups on there (and some pda home Ed ones) with lots of people who will understand your situation.

Thank you. I'll have a look at some of the PDA FB groups. I know a little about PDA but not really any of the techniques for managing it.

It's definitely very very challenging.

I was in a similar situation, eldest was 8, undiagnosed 6yr old with severe behavioural and MH issues, and a newborn. My life was a firefighting shit show for years. It wasn't until 9 years later when then 15yr old was sectioned and diagnosed, medicated, and behavioural patterns broken that we as a family could start to move on. Special school was identified at 9yrs old, but didn't help with diagnosis or recognize MH issues.

With the benefit of hindsight, I would have done less.

I would have chosen my battles with DS eg. not physically put him in a school taxi.

I would have written a list of DS's needs, education and health, then only had mandatory contact with SS, whilst they worked together with LEA to achieve required outcome.

I would not be the glue that coordinated all agencies involved, at the expense of my own destroyed MH resources.

I would join support groups and arrange meets for social interaction.

Sorry to be a bit me me me, just breaks my heart to hear about your shituation, you are not on your own, the system is fucked.

Keep talking, and try not to get dragged down by expectations, this is an ongoing crisis and needs to be recognised as such, be kind to yourself.

My son is now 21, takes care of his own dog, interacting socially and about to start an hours voluntary work per week. Building solid foundations at his own pace.

Sending hope and patience

X

@NotAnotherPinkCandle I know this is easier said than done but I think you need to drop all expectations of what you felt that your life was going to look like. It's awful to accept and I think a lot of us have 'grieved' about things which might never be possible now, be that a career, travelling, child free weekends away (because no one can handle your child and you can't physically leave them as they don't cope without you), going to festivals, even normal days out like going to a farm.
You are allowed to grieve. The whole 'autism is my superpower' message feels hard to accept when you've just come home from another disaster group or play date and your DS is desperate for company. It doesn't feel much like a superpower when they don't understand why the little boy they threw rocks at might not want to come over to play again.
I think this is where the home Ed groups are a bit flawed. They try to encompass people who have chosen that life because of preference and those who are forced to do so because there is no other provision.
I live in a place with loads of home Ed groups and a huge community. They still don't accept children with really challenging behaviours, as they can't afford a 1:1. A lot of them don't really get PDA. My friend with a son who has PDA found no provision which would accept her son. They say 'yes we definitely accept kids with autism!' but they mean quiet bookish types.
It's so fucking hard. I can't put it any other way. Constantly advocating for your child. I'm two years into the EHCP process and I've just given up. I don't get why we have to organise it all. What if I had learning disabilities myself and wasn't used to compiling evidence, self funding EP and SALT assessments, would I get more help? Because right now I feel like I need a law degree and 39 hours a week spare to even get through the process.
Sending many many hugs. I think the baby will be ok. Your son will love their sibling. You will love your new baby. Everything will be ok.

If DS can’t attend school the LA have a duty to ensure he receives a suitable full-time education under s19 of the Education Act 1996 (this should also have happened when DS couldn’t attend MS full-time - btw it sounds like DS was informally excluded which is unlawful). 2 morning a week of AP is not a suitable, full time education. They must also ensured anything detailed, specified and quantified in F of the EHCP is provided. If this isn’t forthcoming email the Director of Children’s Services requesting provision. If that doesn’t work email again threatening judicial review. If that fails contact SOSSEN fro help with a pre-action letter.

Alongside this, formally request an early review of the EHCP. IPSEA has a model letter you can use. Unfortunately, the LA doesn’t have to agree to an early review and if they refuse there’s no right of appeal. If that happened you would then either have to wait for the AR (when is it?) or request a reassessment of needs which does come with the right of appeal if refused.

If having the provision made in a school is inappropriate there is EOTAS. Personally, I wouldn’t EHE, if school isn’t suitable EOTAS can provide far more than the majority of parents can afford to fund EHEing.

Is the OT detailed, specified and quantified in F of the EHCP as it should be? If so, it must be provided and can be enforced. Waiting lists, funding, lack of staff are not lawful excuses. Play therapy can also be included in EHCPs.

He needs to step up with your (HIS) son in that case and share the load. You’ve agreed to have this baby together, albeit unplanned, so he needs to get his shit together as this is not just your issue. I know it’s not easy to force someone to help (been doing it myself for a long time but don’t have as much on my plate as you), but you’ll literally need to say “I’m going out on a walk with the baby, you’re staying here with DS”. He can’t just shy away because he works and he’s tired!

Is your midwife or health visiting team any help? Where I live, we have a thing called home start that helps families like yours with young children, not sure if you have an equivalent in your area?

Can I suggest that you email directly the Head of Education / Child's Services and say you are making a formal complaint.

Start by saying that your child's EHCP is not being met and the department are not engaging with you to find a solution.

Try and (concisely) provide a summary of recent events eg

May 2022 EHCP agreed naming x school
September 1 started school but
You were told that he was held back a year so removed him
September 2 I called x left a message
September 3 I emailed x no response
September 5 I called x again
September 6 x said they could not help due to lack of spaces
etc etc

Etc

Illustrate that the school and department have ignored / failed you.

End with a line about disability discrimination and LA failing in their duty of care.

I spent 8 months wrangling with LA recently and only when I personally contacted the Head of a service did things start happening, and quite rapidly.

Forgot to add, you must also contact Social Care department and asked to be assessed for respite / Direct Payments so that you can get some practical support at home.

This is also lengthy and complex but worth getting onto the system with them too.